victoria conway

Win Oh yes - the catheter - it took me weeks to work out that they must have done that and then I was stupidly horrified! How could they do that to my body - it's mine! I attributed the leakiness to that for a long time afterwards but, honestly, now, I think it's down to a brain that can't cope for me all the time. Lately, though, it's been the other nastier sort of incontinence as well. Other symptoms too eg can't eat much, difficult to swallow so they have been giving me drugs to help with that which could contribute. Whatever, have now been back to (a different) doctor and been referred for an endoscopy - next Wednesday. A different but scary issue. Think of me on Wednesday - it will help. V

My headache started completely suddenly with no prior warning whatsoever on a Tuesday evening. Just sitting, innocently checking my emails (we'd been away for my daughter's wedding the previous extended weekend) and I was happy and relaxed, expecting to get changed and go out for a meal with my step-daughter who had come back with us. Then - wham, some ghost came up and whanged me over the head with a cast iron frying pan. The neck pain followed within seconds. I just remember sitting there feeling stunned and thinking that this was so awful it could not last - but it went on. I had the presence of mind to wonder if I was having a stroke so I moved all my limbs one by one and they all worked. I was already upstairs in the study and my only instinct was to get to bed and lie down - how I got there, I have no recollection of, but I did. I called out to my husband from there (he tells me) and he rang the GP and got through to the Duty doctors. They spoke to me, then him and told him I had a migraine and he was to give me some painkillers and let me sleep. An hour later, he rang again and the process was repeated but I had lost the will to argue - even though my mind was telling me this was something awful - not a migraine. The following morning, according to the notes he sent other members of my family at the time, I got up and had a bath at 7.30 - not like me as I am usually pretty rubbish in the morning! I truly cannot remember doing that or anything else that happened for about 10 days. But I was due to drive the village community bus that morning so it seems something in my brain was still working. My husband put me back into bed and went and drove the bus for me. When he came back, I was up, dressed and downstairs - but seemed to have no idea who he was. This was 1.30 pm the following day. He again rang the GP and described me and an ambulance was sent immediately. I am relying solely on my husband's notes about what happened thereafter but, by 5pm, following a CT scan, I was in another ambulance en route to another hospital. He was told by a nurse at the first hospital that it was "lucky" I had been sent for a scan, as many doctors would not have bothered. At the second hospital, I was taken immediately into the operating room (or what ever they call it) and a drain inserted. The following day they coiled the aneurysm. Then they battled for a week or so to stabilise me - my sodium levels were dangerously low - and the drain took ages to work - three attempts before they finally turned it off. Was I "mis-diagnosed"? Well, yes, by the Duty doctor who decided over the phone that it was just a migraine. But that could be down to lack of urgency on my husband's part and my inability to remonstrate. I do find it distressing that someone thought is was simply "lucky" that I'd been sent for a CT scan - it really shouldn't be down to luck as to which doctor you come across. I was not mis-diagnosed following the scan and I am, now, truly grateful to all those people who fought for me and, dare I say, with me. They told me then I had had a near-death experience. They told me afterwards I had made a remarkable recovery. The aftercare? - well that's another story - and the journey to some acceptance of the resultant damage which no-one helps with. But I am glad I'm alive now, despite moments of despair that I am not as I was.

Dawn, especially, and all of you Thanks. Yes, I need to talk to the doctor. It's the fact that when I do, in a 10 minute slot, he doesn't remember who the hell I am, what my history is. It's all so impersonal now. I will do it

.........continence. Didn't want to put the whole thing in the title so you wouldn't want to read it. Not something we really want to talk about or admit, eh? I have endured it - on the leaky side - since the SAH. Have tried to cope by numerous daily trips to the loo to keep my bladder empty and avoid episodes. It's wearing, especially at work where a trip to the loo means dealing with doors - I have a difficulty with them, especially if they open towards me. I open them - and gaze at them - and then try to work out how I'm going to get past before they close on me again. My life used to be so simple but now I gaze at doors. Well anyway, I've done that. But now it's got worse. Spontaneous oh .... - really. I don't want to be like this. So far, it's only happened at home - until tonight, alone, and I could sort out myself. Tonight, I had to ask my husband for help - clean knickers and trousers. Tomorrow, I need to find out what needs to happen to the soiled ones (think he's put hem in a bucket somewhere). I am simply terrified of this happening when out - and especially at work. Sorry, not a savoury subject - but is there anyone else who has to cope with this?

Lin-lin I have survived! Have rebuilt tooth! I did use your name repeatedly to help - and, something really endearing from my little grand-daughter, who has picked up saying "uh-uh" - so "uh-uh, lin-lin" kept me relaxed as far as possible - along with clutching my inhaler! So many thanks for your help! Don't think my name is of much help in this respect. But you could try thinking that to my wee grand-daughter, I am "Ma-ma" - same as her own "Ma-ma". It is sweet that, despite the fact that I don't see her as often as I would like, she still recognises me as someone special - always has done. So, when your time comes -try just thinking "Ma-ma" Victoria "Mama"

Lin-lin .................! ...............! Really didn't want to say anything about my experience with the Marlon Brando thing before your procedure - so hoped you had already had it done. Sewing buttons for lip as I type - there's a thought - multi-tasking in our condition! Thanks for saying you will think about me on Monday - a thought that will help me. I have numerous methods of trying to relax there - maybe I will mentally chant your name - so if you hear it early on Monday morning it will be coming from deepest Hampshire! Victoria

Lin-lin Have not replied to your post before due to sheer fright! But have been thinking about you and hope you are OK. I had my impacted wisdom teeth (strangely only 3 there!) out years and years ago under a general anaesthetic in hospital and came out like a very sorry and bruised Marlon Brando in The Godfather! But they were deep and well impacted so hope your procedure has not been so bad. I'm bound for the dentist this coming Monday and he is going to grind away one tooth and build me a new one. Like you, I have a terror of that chair. Tim, my dentist, is truly kind and knows my terror - I travel for over 2 hours to get to him because I won't try any other dentist. I know he will make it as least awful as possible but I am still dreading it. My only consolation is that I will stay and spend some time with my daughter and my lovely one-year old grand-daughter as a result of the journey. If you read this, think about me on Monday - have booked the appointment at 8.30 in the morning in the hope that I will not be fully awake and alert! Victoria

Di You describe it all so well with that mobile phone analogy! And you are clearly in the same boat as me with a demanding job - I don't work for a Council but as manager of a charity which deals with them in the shape of direct payments for disabled folk. And like you, if I understand your post aright, it is the bombardment of things that I can no longer deal with - of chatter, demands (why does everyone think that I should deal with theirs whenever they make them?) - and, yes, sheer noise. This year, I have not rejoined the yacht club because, honestly, I cannot enjoy those social get togethers with lots of people in a confined space. I can't sail any more, anyway - insufficient balance - and our yacht has recently been sold - much to my relief but to my husband's regret. I'm not sure he's ever going to forgive me for not getting "better" enough to use her. He still has another boat which he owns with a friend and races that - and I am not stopping him. It isn't that I haven't tried getting "better", "back to normal" (he thinks I should be by now) - but, with the best will in the world, it just does not happen - which is one of the reasons I worry about that exhaustion wall continuing to be there - now and in the future. I saw my hydrotherapist again this last week and told her about my crash - and, interestingly, she said - you don't crash into it - it comes up and stops you. Someone else in reply to my original post said that she had to keep trying to persuade herself that she wasn't lazy - and I truly empathise with that. But we are not lazy - far from it, we have to work brain-wise so much harder just to function. For me, just getting upstairs to bed is an exercise in brain effort of how to climb without stubbing toes and remembering where to stop and turn on the way. Think I've lost a plot here on what I was trying to say - not abnormal these days! I think it's just I've come to a conclusion that I should not beat myself up about being less capable - just wish others could feel the same.

Victoria on a break here. Sort of sausage stew on the hob and it's sit awhile time again! Thanks for all the responses - BTG really does help because it lets you know there are other understanding folk in the boat! Learnt a few things too - like never ask a neurosurgeon about the "fatigue" as they call it - I don't call it that - it's too little and vague a word. No clinical reason there may be but I think my response would have been somewhat more ....... robust than yours, Wem! But then I am not renowned for my patience - or rather, when pushed beyond it, the results are kind of ugly - my children learnt that at an early age! Think it's in my genes - my great-great grandmother was schoolmistress of a village school for 45 years - and during that time gave birth to 13 children. For each birth she was given a whole 10 days off. When 2 of them died as a result of an outbreak of scarlet fever, they closed the school - for three weeks! I have all this from the log of the school from the 1860's onwards which I have and is just magic. Apparently (and this is family lore), when someone once commented that she must have undue amounts of patience to cope with it all, she retorted that the only reason she could cope was because she had no patience whatsoever! I'm with her there. Maybe I'm better off without the patience and enduring the frustration - surely, it makes me keep trying.

I mean it - both of you. Any hope - and the feeling of care - helps. Been a tough few days for me here. Didn't get up till midday today and felt so guilty about it - but I didn't want to/couldn't. Wish I was with you in Scotland, Louise - though resident these days in Devon, I'm a Sutherland girl by upbringing - from God's own country. Down here, it's not cold - just wet wet wet and grey and bleak these days. But the days are lengthening a bit and I keep telling myself that spring will come - saw some catkins the other day up on the moor (that's Dartmoor here) - there are hills here - but not those wonderful majestic mountains. Hope - for spring, for better times. Thanks for your help. Victoria

Does it ever disappear - or, at least get down to just a few bricks? Spectacular crash into mine yesterday. I should have recognised the signs, of course. Wednesday, poor old brain had no inkling of where my feet were from first off. Stumbled on (literally) and went to work. Someone there asked me if it would get better as the day went on and I moved about. What's the answer to that? I HAVE NO IDEA! Thursday - my regular day off work. Husband, kindly, took bus to get to the train so I didn't have to get up early. Expected grocery delivery between 9 and 11am. Decided it would do the deliveryman no lasting harm if I greeted him in my jamas and dressing gown. Sourcing latter when mobile phone rang - downstairs. Staggered down just as it stopped. House phone rang - answered - work - can't get into one part of accounting system. All other parts OK - just one member of staff who can't. Response terse. Reboot her computer and try again. If I don't hear from you, I will come in and sort - but not till delivery received. Man came - grocery bags all over kitchen floor. What to do now? Unpack? Get dressed and go? Follow normal routine of my day off - bath and hairwash? Decided on latter (which wears me out anyway - but at least reduces the stiffness in my legs which exacerbates mobility. So bath - hairwash - abandon idea of hairdry (haven't done that since the horrible event!) - leave grocery bags all over kitchen floor. Now 10.45 - get keys and go. Reached 1/2 mile from home, mobile phone rang. Luckily, I have sorted out Bluetooth connection through the car radio (husband v jealous of this!) so press button to answer. Recalcitrant member of staff reporting has access to accounting systems. Bite tongue (it's pretty short now!) - and turn back home. Grocery bags still all over the kitchen floor (where is that unpacking fairy?) - need breakfast. Make coffee - tripping over bags. Slop some yogurt into bowl. Add muesli. So tired, it's difficult to swallow even that. Sit awhile - because it's all I can do. Clock strikes 12 noon. Grocery bags beginning to look sullen on the kitchen floor. Decide I need to unpack, at least, the things that belong in the fridge. But the fridge is in the utility room - involves a step and my feet and the bags are heavy. Decide to unpack the things that go in close cupboards. Start with wine rack - an easy one - and disposes with three bags because they're so rubbish at packing! Not so much luck with the coffee/tea etc cupboard. Seems to be stuffed full already but poke it all in holus bolus. Sit awhile - because it's all I can do. Clock strikes 1pm. Have 2.45pm appointment with hydrotherapist - first since five weeks ago. Christmas, my mother-in-law's needs and her mother's needs have got in the way. Need to think about where swimming stuff is, whether I have £1 for the locker, what has happened to my little bit of cloth which is applied to the end of my stick to stop it skitting about on the pool edge etc etc. Abandon unpacking - rationalise by fact that kitchen floor cool and fridge stuff won't harm too much. Sort all that out - bit of panic over the little bit of cloth but it reappears in the bottom of the bag, even though I "know" I've looked there before. Get to appointment - lovely to see my hydrotherapist again. She has been my saviour in all of this. She's kind and gives me an easy session but still, I trip and wobble - and, when it gets to some sort of tap dancing routine because nothing will obey me and I start the yawning - she brings me gently out. She is magic as she can somehow still give me a sense of achievement, even when I've been so rubbish. Get home - remainder of grocery bags still all over the kitchen floor. Could sit awhile but have to pick up husband from train and feel grocery bags should be sorted out. Redistribute fridge stuff into vacant bags and make several trips up/down step to fridge. Redistribute remainder to worktops to make it look like I tried. So - how many signs did I need? Feet not in connection one day - next, a whole day of indecision? Why should I be so surprised that, on Friday morning, I simply could not get up. Could not contemplate eating - and, when I tried that, could not keep anything down. The exhaustion wall simply stood before me and said stop. But - back to my question. I think I have accepted, at least, that, though I could do all in the past, it is not the case now. I am 2 1/2 years after the event now. What I want to know is - does it get better? Or is this it? Is that wretched wall there forever?

Oh - how I sympathise with you. It's the not knowing what to expect and the OMG what's happening to me that is the worst thing. I have never worked out why they never explained that turning was an issue - the first time I tried it I quite simply found myself stretched out on the floor. I've been a lot more careful about it since. I'm 2 years ahead of you in time since now. There was an explanation for the bleed - a ruptured aneurysm - and, like you, I had the hydrocephalus and am convinced that that and further brain swelling due to disturbed sodium levels did the real damage. It's taken me all the time since, and a lot of help from a good hydrotherapist, to get me standing up straight and at least trying to move forwards straight since. Not always successful - I'm pretty good at lurching - especially when worn out. The "would it have been different if they'd scanned me earlier" question? Alas, we will never know. The duty doctor at the end of a phone advised my husband to leave me in bed (where I'd crawled with that sudden incredible headache - like some ghost had come up and hit me over the head with a frying pan) and treat it as a migraine. When I no longer recognised him the next day, he called the ambulance. At the first hospital, where I did have a CT scan, he was told by a nurse that it was lucky (!) that a scan was done at all - at the second, I went straight into surgery, which saved my life - but left me unknowing as to what to expect when they discharged me some three weeks later. To this day, I don't really know. I can remember what I used to be able to do, without thinking about it - I used to sail, I was a trained race officer for sailing races - I used to leap on boats and just do all that. I used to ski. I used to ride horses. Today I have to think about getting 200 yards to the village shop. Life has changed and it's taken me two years of angst to accept it. I'm planning my retirement - still struggling to work because I have a, probably misconceived idea, that my charity needs me. I'm 61 anyway - time to hand on. But it's not easy. It never is until you have completely accepted that things have changed. I won't tell you that I've reached that stage yet - at times, I still rail in my mind - this shouldn't have happened. Give yourself more time - I found it hard to accept that advice at your stage, still find it hard now - but it does get a bit easier with time.

I was told in hospital that I would not be able to drive and that I should tell DVLA. It's never that easy, of course, with government departments and, with help, I found the way to inform them. Gave them all the details (can't quite remember how!) and they wrote to me and said I had to send my licence back and could re-apply for it after 6 months. Worst thing I had to do in my life was envelope up my licence and put it in the post box - like a complete giving up of independence - but, at the time, I accepted it because I really was in a complete fog about what had happened to me. And, honestly, I was not fit to drive then. After the due 6 months, I re-applied - you have to do that on a form as if you had never had a licence. Heard nothing. Called them and they said they couldn't talk to me about it but a letter was in the post. Letter arrived, they had my re-application and had written to consultant - they expected to hear from him in 6 weeks! Waited 6 weeks - did not hear from them. Called again - they said they had not heard from consultant. Called consultant's secretary who told me he had answered a month ago. Called DVLA WHO ADMITTED THEY HAD HEARD FROM CONSULTANT AND LETTER WAS IN THE POST. (INVOLUNTARY MOVE TO CAPS HERE!!) Letter arrived - and it said they had heard from consultant and my re-application had been referred to their their medical specialist - I could expect to hear again - but not for 6 weeks! Cue tears and, eventually, after calling them again with the tears, my licence was re-issued. So 6 months plus 6 weeks plus 6 weeks = 9 months without my licence. I guess all circumstances are different though - I had a nasty haemorrhage with hydrocephalus and ensuing complications with low sodium/brain swelling issues. I have mobility problems as a result and some horrible conceptual issues. I do drive but not very far or fast. I have had my vision carefully checked and also had someone independently assess my driving. The last thing I want to be is someone who irritates other road users. I don't drive at night. I'm not daft - just someone who recognises a loss of capability. At the end of the day, it was right that they said I couldn't drive for a while - what really got to me was the frustration of their time impositions - the constant 6 weeks. At work, where I deal a lot with DWP for disabled people, they give me 10 days to respond to their letters! Doesn't seem to work the other way round, eh? So - my advice is call the DVLA and keep calling them, even when they write to you and say you shouldn't call them. But be sure that you want to/are capable of doing the driving thing! Victoria

Hello Lawson Two years plus now - and I'm still being sick. Suddenly, like you. Like you too, I had the hydrocephalus and I have, I think, worked out that it was that did the real damage to my poor old brain. I know when it happens to me though - when I've done too much, expected more of myself than is possible. The real difficulty for me is getting other people around me to accept that I can't do more than is possible. It is tough - but you have to be strong for yourself. Like me, you are a woman - and we have been accustomed to being the supporters in life. Now, we have to support ourselves, think of ourselves (without feeling selfish about that). Something quite nasty happened to us and our brains are damaged as a result. I know I found the concept of having damage to my brain really hard to accept to begin with - it simply wasn't meant to be, was it? Not only that, but the people around us (in my case, anyway) were told that I would just fully recover within some magical period of 6-12 months. Believing this, because nobody talked to me about anything then, at 6 months, I was totally disappointed. At 12 months, I was incredulous. At 24 months plus, I have, reluctantly, accepted that I am not the Victoria of old. And that I never will be - though I try really hard to learn to walk properly again. I'm sorry - not offering much comfort - can't say it will just go away. It does take time to realise and accept though - that much I do know. And, at times, my acceptance runs out and I rail to my inner world. In my terms, you are at a really early stage in dealing with it all - be patient - but don't expect perfection. Hope this helps. Love Victoria

Hello Myra I too have hearing problems - the constant buzzing of tinnitus makes a) just hearing and filtering out the background so hard. Like you my BP has gone crazy. 175/155 when I keeled over at rehab a few weeks ago. Not a good place to do that as they get all excited and want to keep you in the hospital - which is the last place I want to be. So, with a load of pills which have made me very sick and dizzy, it came down to 160/100. Still not good enough in their books so I now have a different load of pills - which make me ............... sick and dizzy. I will go back next week to see if they have had the effect they desire. As for the hearing, they don't want to hear about it - perhaps they can't hear either! The whole focus at the moment seems to be to rectify the BP and see what that does. I can't imagine it will have any effect on the hearing - I've had those symptoms ever since the SAH. I only ever had one follow up after it and they said wait and see until the next one - but there never has been a next one. It's as if they just abandon you if you have survived the thing. My thoughts and sympathies are with you - not much else I can offer. Victoria

Oh - how I empathise with all that has been written here. In my job, I have to deal with a lot of people's stress. I am the manager of a charity which provides financial administration services for disabled/ill folk who receive direct payments for their care and have to deal with the implications of this themselves like employment taxes, returns of their spending to the authorities and, quite simply, paying for their care. They are often very anxious people, particularly at the outset when things don't happen exactly when and how they expect. Sometimes, they rant and rave over the phone - both to my staff and eventually to me. I find it helpful to actually say that I cannot deal with this because of my own illness and that usually diffuses the situation. Alas, it does not always work and some people are simply abusive - and foul-mouthed. Then I say, politely, that I cannot continue the conversation and put the phone down. My staff have instructions to follow the same lines. No-one should be expected to take abuse - whether well or not - and saying so directly is the answer. As for other things in life - like many of you I cannot tolerate noise - particularly that of electrical saws and strimmers etc - it seems to me that no man is happy without such a tool in his hands and some days I just want to scream at them to stop - there is enough buzzing in my head already! Situations with lots of people talking - like events at the yacht club that my husband wants me to go to - I cannot cope with it - sorry, no. Even the supermarket with people coming towards me, apparently not seeing me (I'm only 5 feet tall and have always had a problem in crowded situations) and, with my now dodgy balance - I avoid. Online shopping is the answer. It is all a bit isolating though - but there is always the village shop across the way where people know me and help - the shop owner even carries my shopping home for me when I need it. I am lucky there - even if the journey to the shop is a bit fraught with hazard. First, I have to cross a busy road - there is a zebra crossing but many people ignore it. I have even had a police car sweep across me in front of me on one occasion! On the other side the pavement is narrow and a passing lorry can cause me to fall into a doorway - which happens to be that of the village pub - so, I am probably the only person I know who falls into a pub rather than out of it! And who was it said that she heard the tone in her husband's voice - "gotta do this and that" - oooh, I know that and it's every day, isn't it? And from the beginning of each day. It colours life. Sorry, I'm rambling - are we hyper-sensitive? No - we simply have a brain injury which has changed our tolerances of so many things. We have to learn to adapt to it in the same way as we adapt to the exhaustion wall, which still hits me - usually when I really don't want it. Don't know whether I should post this - but will do - love to all, Victoria

Yep, I have the dent too. Right hand side, just behind the hairline. It was a pesk till I managed to remove the last of the sticky blood around it. 2 years on, it's still there and I just assume that it's with me forever as a wee reminder of the simple fact that they felt the need to bore into my head to save my life. Can't say I notice any changes in it though. Me, I'm more concerned with symptoms. Keep thinking I'm getting over it all - moving on - what everyone around you wants you to do. Trying so hard. Then sick sick. Horrible. Try to do less - get accused of giving up. Try more. Sick sick. Horrible. Think I'm stuck in a loop here.

Kayleigh Be prepared for the DVLA to drive you to distraction, I'm afraid. Like you, I had a shunt to get rid of all that liquid and they revoked my licence for 6 months - said that was automatic and standard. They said I could reapply for my licence a month before the six months was up - so I did. No response so I rang them and they said it would take 6 weeks to consider my reapplication! At the expiry of that, still with no response, I rang again and they said they were posting a letter. It duly came and it said they had written to my consultant and expected a reply within 6 weeks! At the end of that, yet again with no response, I rang again and they said they hadn't heard back from my consultant and advised I contact him. I did so and his secretary told me he had replied a month ago! Back on the phone to DVLA and they confirmed they had received it and I should expect another letter. That came and said that they had referred it to their medical gurus and I could expect a decision - guess what, in 6 weeks! By now in despair, I rang them again and wept over the phone. They said they would send me a letter. I asked when - in 6 weeks? The following day, I rang again, having decided I would just keep doing so on a daily basis - and they told me I had been misinformed and my licence was being re-issued. So - it was pretty much 10 months before I could drive again. However, if your licence is revoked for medical reasons, you can get a bus pass! I'm careful about driving now - very conscious that I don't have the same level of sustained concentration and there is always the exhaustion wall to consider. Keep getting better - be kind to yourself and your body. My thoughts are with you. Victoria

I was asked to take part in the UCL study as I have an inherited condition called Ehlers Danloss Syndrome and they are interested in that and a possible correlation with SAH. I gave an armful of my blood and answered a lot of questions but will never hear of any outcome! My son and one of my grand-daughters have acquired the same syndrome through me - in my grand-daughter's case rather severely. So, after my own SAH - I asked my consultant whether he thought they should be scanned for aneurysms and, after a while, he wrote back to me essentially saying they should take it up with their own doctors but that, in any case, no-one would know what to do if they did find anything on scanning them. The Ehlers Danloss is interesting. Looking back on family history (it passed to me through my own father), I can see some of the symptoms in one of my siblings but it is much more pronounced in me. Likewise, in my father's family, one of my aunts was afflicted more than any of her other siblings. She died suddenly of a "stroke" (possibly SAH) at almost exactly the same age as I suffered mine! We are very similar in size (a scrape over 5' and tiny with it) with almost constant joint problems - I can dislocate a thumb just by placing it in the wrong place on the steering wheel which is a pain in more than one sense of the word! The effect of the syndrome results from a defect in collagen - one of the building blocks of all sorts of things in the body. So - I am prepared to believe that there may some correlation between that and the existence of aneurysms. But what causes them to rupture, I have no idea. Certainly, when my SAH occurred, there was no apparent reason. Just going about my normal business and scanning my emails when the wretched idiot with the frying pan came up and hit me over the head! Sorry - I'm rambling - tend to do that now. The point I'm trying to make in response to this thread is that SAH in itself may not be hereditary - but there may be other conditions which are that give a predisposition to its occurrence. Anyone else have this syndrome? Victoria PS I found this site about a month after I had the SAH and, for one reason or another - mainly trying to persuade myself I should be better - have not been back until now - 21 months after it. I has been a comfort to come back and see that I am not the only one still going through the effort of recovery and dealing with the issues of mobility, balance (they call all this loss of "proprioception" for me) - and the entirely wretched constant buzzing in my ears. Not to mention the DVLA - but all government departments = total frustration. DWP, HMRC - all of them, heartless.

Gosh - what a wonderful welcome from everyone. And lots of good advce too. Thank you, one and all. I will be back. Victoria

............. it is the first place I have found that gives me actual experience of what has happened to me. My SAH was about a month ago and the anuerysm was clipped and then coils inserted. I am now home but have found the whole thing bewildering and a bit surreal. I sat in the garden the other day and thought that I don't believe this has happened to me - it must have been someone else. I do, however, remember that dreadful headache and accompanying neck pain. All I could do was crawl into bed. My poor worried husband rang the duty doctor who spoke to me and diagnosed migraine. However, by the next day, I had no idea what was going on and my next recollection is waking up a week later in hospital. I had a drain in my head, a saline drip and what appeared to be a pair of giraffe horns up my nose. I gather these were delivering oxygen as I had insisted on dispensing with the mask! My major worry now is how much I should/should not do. There seems to be no follow up in place at all. I have talked to a GP and my local physio who has been treating me for joint issues for a number of years now and both say listen to my body and follow what that tells me. I have worked out that bending and moving about too much induces a headache and I am still taking painkillers every day. I would like to go back to work for a couple of hours a day (I am a manager of a local charity which helps with financial administration for disabled people who manage their own care via direct payments). Can anyone tell me whether it is safe to do this? Would be grateful for any advice!